Cover Image - What Happens To Your Neurodiverse Adult Child After You’re Gone?

What Happens To Your Neurodiverse Adult Child After You’re Gone?

By Jill Poser – Kammet, CGCM


The Case of Steven and Brian

Steven is a 63-year old single man who resides in the home he lived in with his mother and father before they each died. Throughout the years Steven lived with his folks and did not seem able to maintain employment since his mid-20’s. He was however able to achieve a bachelor’s degree as well as a master’s, leaving his parents hopeful that Steven would get on his feet and make his way. Years rolled into decades and Steven did not make his way. He continued to live with his parents and moved to Florida with them when they retired. They would explain that Steven’s inability to get a job and live on his own was because his skill set did not lend itself to market trends, the economy was bad, he relocated to Florida and the job market is different than the Northeast, and so on.

On the other hand, Brian, Steven’s younger brother flourished. He became a successful attorney, raised a family and took his place in his local community. Over the years, Brian would express his concerns about Steven to his parents and encouraged them to get professional help for Steven to address his inability to manage his own life. Each time, his parents would minimize the issues and drop the conversation. Steven and Brian grew to have a good deal of resentment toward each other. Brian unsuccessfully continued to engage his parents about planning for Steven after they were gone. All the while, Steven was left with the impression that his folks would always take care of him and he had nothing to be concerned with. Unbeknownst to Steven or Brian, their father lost the lion share of his portfolio in high risk investments leaving Steven without any safety net for the future.

Life Without A Net

Their father passed first, and after their mom’s death in 2017 Brian felt a sense of responsibility toward Steven and chose to be more active in his life. Steven seemed to be managing his own complex health needs, including in-home dialysis as well as financial responsibility for monthly expenses. Brian was cautiously optimistic and would do his best to engage Steven about his affairs without discouraging him. Steven would continue to state that he had everything under control. However, more recently, Steven received a notice that the courts would pursue legal action regarding foreclosure on his home dating back to 2017. Brian had no knowledge the home was in foreclosure. Luckily, the hearing was delayed because of Covid-19 restrictions and Steven’s case was postponed giving Brian an opportunity to help his brother. Steven has repeatedly refused Brian’s help because as he explained, he does not want anyone to have authority over him. Steven has significant health issues, no financial wherewithal and will have no place to live once the home is foreclosed upon.

Aging Children, Aging Parents

While there are many painful, emotional problems that arise for parents and siblings of children with special needs, it seems that most often the caregiving responsibility falls largely on the parents. And, as the child ages, so do their parents. Aging parents may begin to face the additional challenges of their own aging process which can significantly impact their ability to maintain the role of primary caregiver. In our work with families of adult children with special needs, it is not unusual to find that the aging parents have not planned for the future of this child and may assume that siblings or other family members will take on the role of caregiver after their death.

Steps To Prepare For The Future

There are tangible steps parents can take that will ensure that their adult child with mental illness or special needs will be properly cared for once they have died and their other children can be actively involved without feeling so burdened. However, it requires that parents recognize there is an issue and make future caregiving decisions before the family is in the midst of a crisis, an aging parent becomes incapacitated or dies. The fact is that the lack of planning can have significant consequences for the entire family.

  1. Have they had ‘the conversation’ to make clear the roles other children or family members will play in the life of their child with serious mental illness once they have passed or can no longer serve as the primary caregiver?
  2. Where will their child live when they can no longer take care of him or after they are gone?
  3. How much can they afford to provide for their child’s ongoing care and maintain their own growing care needs?
  4. How much will be left for their child’s ongoing care once they have passed away?
  5. What legal documentation have they executed to support the long-term planning and ongoing care of their adult child with serious mental illness?
  6. How does their estate plan impact the lives of their other children?
  7. Do they have strategic alliances with key professionals to problem solve and help them plan for their child’s future?
    • Care Manager
    • Elder Law and Special Needs Attorney
    • Guardianship Attorney
    • Estate Planning Attorney who has strong relationships with Guardianship and/or Elder Law and Special Needs Attorneys
    • Financial Adviser

 

These are some of the critical questions we address with our clients facing the issues of long-term planning for their adult child with serious mental illness. I encourage anyone facing these issues to be proactive, well thought out and seek the proper guidance. It can be so difficult but the lack of planning can be daunting to those left to pick up the pieces.

Headshot of Jill Poser-Kammet

Jill Poser–Kammet, CGCM, is Director of Life Care Planning at Advocare, a comprehensive care management company serving all South Florida from the Palm Beaches to Miami. Jill is a Certified Geriatric Care Manager by the International Commission on Health Care Certification with 12 years of experience in elder care, care management, life care planning, Medicare home health sales, special needs, and aging-in-place construction. For more information about Jill and how she can help you and your family call (954) 604-1015, email her at jposer@caremanage.com, or look for her at Facebook or LinkedIn.